That's been my experience Peggy. The waxing and waning is something my doctors can't explain which means they don't know. I can't believe they told you your nervous system is dying when they don't know why. How depressing is that? I wonder if any other doctors has said this to their patients...and if it is true. So what happens when it's dead? Did they give you an end of the road scenario? You should ask if they've ever treated anyone who's died from SFN. From what I've read, people don't die from SFN.